Lakeland family still hoping for a miracle after mystery episode leaves teen paralyzed and unconscious

By Gary White The Ledger

Saturday

Jan 30, 2016 at 9:18 PM

It would have been easier to simply accept the grim fatalism of the doctors and leave their daughter in a nursing home for the remainder of her life. Had they done that, Jeff and Karen Baker wouldn't now be facing the raft of challenges that come with caring for a profoundly disabled 17-year-old girl. The master bedroom of their Lakeland home wouldn't resemble a hospital room. They wouldn't spend their days dealing with feeding tubes, keeping track of an array of medicines and suctioning mucus from their daughter's throat. But the Bakers promised their daughter, Amanda, they would eventually bring her home. That was more than a year ago, when Amanda — Mandy, to family and friends — lay in a Tampa hospital room following a still mysterious episode that left her paralyzed and unconscious.

LAKELAND — It would have been easier to simply accept the grim fatalism of the doctors and leave their daughter in a nursing home for the remainder of her life.

Had they done that, Jeff and Karen Baker wouldn't now be facing the raft of challenges that come with caring for a profoundly disabled 17-year-old girl. The master bedroom of their Lakeland home wouldn't resemble a hospital room. They wouldn't spend their days dealing with feeding tubes, keeping track of an array of medicines and suctioning mucus from their daughter's throat.

But the Bakers promised their daughter, Amanda, they would eventually bring her home. That was more than a year ago, when Amanda — Mandy, to family and friends — lay in a Tampa hospital room following a still-mysterious episode that left her paralyzed and unconscious.

The Bakers fulfilled that promise Nov. 9, removing Mandy from a Largo nursing home and installing her in a converted bedroom of their North Lakeland house.

Karen Baker, 49, had been able to visit Mandy only on weekends since returning to her job as an audiology health technician early last year.

“We are blessed to have her home,” Karen Baker said. “We're together. Being together is everything.”

The Bakers still face monumental challenges. Jeff Baker has been unable to work since December 2013 because of a back injury and has delayed needed surgery because of Mandy's situation. In the meantime, he has applied for disability benefits.

The Bakers lack a custom vehicle able to accommodate Mandy's bulky electric wheelchair. The used hospital bed they acquired for Mandy malfunctioned two days before Christmas and needs a repair.

Mandy remains awake but unresponsive and does not speak or otherwise communicate directly. A pulmonary embolism caused a heart attack last year, leaving her with severe brain damage, and doctors have told the Bakers their daughter will never recover.

Yet the Bakers say they perceive clear signs of improvement in their daughter since her surroundings changed from an institution to the family home, where she has the daily presence of her parents and her younger sister, Elizabeth.

“In the year she spent in the hospital and the nursing home, not one time did we see a smile on her face, ever,” said Jeff Baker, 50. “The first week she got home, one day she was smiling all day long. If a song comes on that she likes, you'll see her brighten up and tune in to that song. If I'm talking to her, she'll turn her head right to me and focus on me and listen to me.”

The Bakers say they made their decision against the advice of doctors at the Largo nursing home.

“They told me going in, 'Do you know what you're biting off?' ” Jeff Baker said. “I didn't view it as a choice, really, so I felt like I had to do it regardless. I'll deal with my sanity later.”

PUZZLING SYMPTOMS

The agony began for the Baker family in August 2014. Mandy, preparing for the start of her sophomore year at Lake Gibson High School, began complaining of back pain, burning in her arms and then numbness and tingling in her legs.

The Bakers took Mandy to the emergency room at Lakeland Regional Health Medical Center, but initial tests found nothing wrong and a doctor said she was having only an anxiety attack. When Mandy tried to stand and leave her bed, though, she collapsed. She was referred to a hospital in Tampa.

As doctors ran further tests, Mandy began having fainting episodes and went into cardiac arrest in the early hours of Aug. 13. It took a large medical team 15 to 20 minutes to revive her, Jeff Baker said, and a subsequent MRI revealed “catastrophic” brain damage.

About two weeks later, Mandy seemed on the verge of death before an emergency operation led to repair of her feeding tube, which had become dislodged.

By that point, the Bakers said, doctors no longer seemed interested in determining the cause of Mandy's original symptoms, and nearby rehabilitation centers specializing in brain and spinal cord injuries refused to take her.

The Bakers' only option was a nursing home, and the closest one capable of accepting Mandy was in Largo, about an hour's drive from Lakeland. Mandy was admitted in February.

For the next nine months, Jeff Baker spent much of his time at the Largo facility, sleeping at Ronald McDonald House in St. Petersburg. Karen and their 13-year-old daughter, Elizabeth, visited on weekends.

Baker sat for hours reading aloud to Mandy from the “Hunger Games” series and “The Chronicles of Narnia.” The family also played Mandy's favorite music, such as the Jason Mraz song “I Won't Give Up.”

Baker, a man who doesn't conceal his emotions, said the long period of Mandy's confinement in the hospital and then the nursing facility greatly stressed the family. His dissatisfaction with details of her care led to disputes with doctors and staffers.

“There were so many things literally ripping our marriage apart, ripping at our family's threads,” Baker said. “It was weighing on everyone, having her so far away, having all the complications she had with her care and her lack of care. And then there's anger that comes with that, and the anxiety. I may tee off on Karen because I'm frustrated.”

Jeff and Karen Baker have cashed in their retirement accounts and used up their savings to cover the costs of bringing Mandy home.

Bringing Mandy home required major renovations to the house, including replacement of the tub in the master bathroom with a roll-in shower. Baker said a contractor abandoned the job before it was finished, and it took help from friends and a local service organization to complete the work.

A longtime friend, a man with terminal cancer, donated $5,000 toward the cost of an electric hospital bed that can be programmed to vibrate, clearing Mandy's lungs of mucus, and to rotate the air mattress and reduce the risk of bedsores.

Mandy, who played multiple instruments and performed in the Lake Gibson High marching and concert bands, arrived home to a bedroom decorated with a musical motif: a metal display of musical bars and notes, a “ROCK & ROLL” fixture and mounted vinyl records on the walls.

A small, stuffed bear wearing a maroon Lake Gibson shirt hangs near the bed, and a few small angel figures, gifts from family members, adorn the wall behind the bed.

Mandy, wearing gray leggings, black socks and a black T-shirt reading “The Tribe” (the name for the Lake Gibson marching band), lay on the purple mattress of her large hospital bed. Her cheeks appeared flush, an effect of the neurological damage that affects her body's temperature control.

The girl's blue eyes were open, and her gaze often moved toward her father. Her parents spoke to her in a natural tone, and Jeff Baker rubbed Mandy's shoulder while Karen Baker massaged her ankles.

Mandy, who had planned to become a biochemist, shows the effects of being bedridden for 17 months. Her right arm is pulled up toward her chest, her elbow bent at a severe angle and her hand contorted. Her left arm extends stiffly at her side.

She also developed “drop foot,” a risk for bedridden patients that results in the feet become rigidly flexed forward. The Bakers would like to have Mandy receive injections of Botox, which doctors say could help relieve her muscle tightness, allowing a physical therapist to stretch her limbs without risking damage to her joints. Baker said their insurance company denied coverage, and he is appealing the decision.

MEDICAL MACHINES

A table to Mandy's right holds a beeping ventilator machine with a plastic tube running to a port in her trachea. Karen Baker said her daughter is capable of breathing on her own but does so irregularly, so the ventilator makes the process less taxing to her system.

A wire from a small clamp on Mandy's right index fingertip runs to a pulse oximeter, which displays her heartbeat and oxygen levels. A humidifier conditions the air entering her throat to keep the air passages moist, and another machine adds oxygen into the air tube. A nebulizer allows the delivery of medication into her lungs.

On the other side of the bed sits the device that pumps sustenance to Mandy's body. Karen Baker opens a can and pours a brown liquid she refers to as Mandy's “milkshake” into a clear bag hanging with a tube running into her abdomen.

Because the girl is unable to clear mucus from her throat by coughing, someone else must regularly suction the material from her trachea.

On a recent evening, the Bakers noticed Mandy's oxygen level was low, indicating a buildup of mucus in her throat or lungs. Jeff Baker grabbed a suctioning device, removed Mandy's tracheotomy tube and began vacuuming her throat opening, while Karen Baker used a bag valve mask to force air into Mandy's lungs.

Apparent discomfort showed on Mandy's face, and her eyes became watery.

“I know, Sweetheart,” Baker said soothingly as he continued his work. “I know, Baby.”

A tall metal cabinet in one corner of the room contains cans of Mandy's nutrition supply and some of her medications (others must be refrigerated), most of which she receives through her feeding tube. A red tool cart holds various medical devices and a clipboard used to record Mandy's feeding and medication schedule.

The Bakers are not entirely alone in caring for Mandy. Soon after her arrival home, the family found a nurse to visit four nights a week, and they recently enlisted a day nurse as well.

The hospital bed malfunctioned Dec. 23 and needs a repair, and the Bakers would like to buy a van but don't have the money. The Bakers created a campaign on GoFundMe.com with a goal of $100,000 in donations. Through Jan. 22, they had received pledges of more than $22,000.

GRATEFUL FOR HELP

The past 17 months have been grueling for the Bakers — emotionally, physically and financially — and they say it would have been even more difficult without the support of relatives and friends. Jeff and Karen Baker expressed gratitude toward students and employees at Mandy's former elementary and middle schools, and Lake Gibson High School, who have done fundraising for the family.

Those offering crucial help include Danny and Vicki Wilkins of Lakeland, close friends Mandy used to address as "Uncle Danny" and "Aunt Vicki." The latter often accompanied Karen Baker on visits to Mandy at the Tampa hospital and the Largo nursing home.

Vicki Wilkins said she often used to pick up Mandy's favorite drink — chai Frappuccino — during visits to Starbucks. These days, when Wilkins pours the brown formula into the bag that supplies the girl's feeding tube, she asks Mandy, “You ready for your Frappuccino?”

Wilkins said signs of Mandy's emotional responses to her environment have become more pronounced since she came home.

“You can tell a difference now that she's home,” Wilkins said. “Sometimes when you talk to her, she'll grin and kind of make a snicker. … You can tell when she's upset. Her eyes tear up or her face will change.”

Wilkins also has observed the effects of Mandy's ordeal on her parents and sister. She said Jeff Baker, a devout Christian, sometimes seems to consider Mandy's plight a punishment for his own shortcomings. Baker said he closes every nightly prayer by asking God for patience and understanding.

Wilkins said the experience has deeply affected Elizabeth, who was twice prepared for her sister's seemingly imminent death. Elizabeth used to be devoted to sports but has stopped playing soccer since her sister's plight removed her father as her coach.

Elizabeth has shifted her attention to music, a choice her father considers a tribute to Mandy. He said Elizabeth is training herself on guitar and keyboards, instruments Mandy played, and sometimes sits at her older sister's bedside to play guitar for her.

“She loves and misses Mandy more than anyone knows but doesn't like to talk about it,” Baker said.

Although most of the doctors have said Mandy has no chance of regaining higher brain function, the Bakers take comfort in recalling the words of a few who said Mandy seems different from others they have seen with severe brain damage.

“Several of the doctors told us this is it and there never will be any more than you can see,” Baker said. “I told them that's really between her and God.”

Karen Baker added: “They give us no hope for changes, but we're hoping for a miracle.”

— Gary White can be reached at gary.white@theledger.com or 863-802-7518. He blogs about tourism at http://tourism.blogs.theledger.com. Follow on Twitter @garywhite13.

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